And the Award for Best Actress Goes to…


…Jenna, for her role as a Lyme sufferer in the short drama, “Never Show Them how you Really Feel.”  I know she gets it honest, just as I do from my mom.  I’ve seen Mom practically drag herself across the room to get something for someone else, and still say, “I’m fine.”  Occasionally, I have to catch myself from doing the same thing, so that Jenna learns that it’s okay to say, “No, actually I feel like crap.” 

Her ability to mask her pain and overall feeling of major blah from others never ceases to amaze me.  Last night she put on quite a performance.  Sitting on my in-laws porch, chatting away and laughing, Jenna held herself like a princess in court.  In fact, if you didn’t know up front that she wasn’t feeling well and if you didn’t observe her really closely, you couldn’t even see the slight tremors when she held in the involuntary twitches of her head and neck.  Imagine trying to completely hold in a series of five sneezes in front of a large group of people, while smiling. 

Unfortunately, Jenna and I both knew from experience that she would have to pay for her antics.   She had a short narcolepsy attack on the three mile drive home and then endured several hours of the vicious narcolepsy/seizure cycles.  At one point I went out to get her a drink, thinking she was doing okay, and hadn’t even taken the glass out of the cupboard before I heard her hit the floor.  She had literally twitched herself off her bed and then went out cold with the narc attack.  You know, maybe narc attack isn’t the best way to put it, because there are times when her seizures are so painfully violent that it almost seems more kind that her brain takes her under.  The not-so-kind part of the attack is the short-term amnesia she experiences when she wakes up not knowing who or where she is, who I am, or anything about her life.  The fear in her eyes breaks my heart every time even though I know she’ll eventually come around.

This past week Jenna and our community lost a beautiful friend to her courageous battle with cancer.  While I never had the honor or pleasure to meet Tiffany in person, I am so thankful that she and Jenna could “talk” online when they were both in need of a friend who understood.  As I’ve heard people talk about Tiffany and the incredible impact she had on so many lives, I’m convinced that one of the bonds that she and Jenna shared was the inherent need to make sure that those around them were happy and worry-free, regardless of how they personally were feeling.  The ability to put others first at any cost is most certainly a gift from God –one that we all need reminded of now and then.  Even so, I’m still convinced that a young woman we met at the MCAdA DisAbility Awareness Day last year had it right.  She suffered with Fibromyalgia and told us that whenever anyone told her she “looked good,” her response was, “Thanks!  It’s God’s way of compensating for how bad I really feel.”

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1 Response so far »

  1. 1

    Janice said,

    Thanks for posting this. I hope it helps people to have more compassion for those who suffer silently. I also think you should post about YOU, and what you’re going through. It may help others who provide long-term care to someone who is ill.


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